On Saturday 13th October 2018, my friend contacted me to say that she’d received a letter stating that Ruby-Rose does not meet the criteria for a Family Fund Grant. In the summer of 2018, after seeing Ruby-Rose several times I encouraged her family to apply for a grant after receiving 3 years of grants that had significantly made a difference for my eldest daughter, Amber (now 6.)

Since the age of 3 months, Ruby’s mother, Claire has been asking my advice as she noticed something regarding Ruby’s development, some may say that this is very young, but I can completely relate as parents, we are the experts on our own children.

Ruby has been seen by a great deal of professionals at her young age, she also received hospital care for Meningitis at 5 months old, this was an extremely worrying time for the whole family. Ruby has been seen by Health Visitors, GPs, Paediatrician, Physioterapist, Specialist Play, and staff at a local SEND school who are offering support as Ruby will need to attend this school when she teaches Nursery/Reception age.

Ruby has been assessed as having a cognitive age of 3 month old, she does not interact with her 2 sisters, to this I’ve witnessed on several occasions. She doesn’t respond to her name and has a great deal of sensory processing difficulties. On the whole, Ruby is a ‘Sensory Avoider’ she is startled by sudden movement, loud and unexpected sounds, has difficulty eating foods that aren’t soft/puréed and therefore has a very restricted diet. She is very tactile defendant, she doesn’t like physical contact and gets distressed, especially when being examined by professionals, such as a Physiotherapist, making it difficult to work with her.

Ruby is currently screams for hours on end and demands and needs around the clock care, she is also having sleep difficulties, finding it hard to settle at night.

Ruby is calmed via sensory equipment such as lights, we known this from when the family attend the ‘stay-and-play’ sessions at the local SEND school and they’ve also taken her to an ‘Autism and Additional Needs’ stay and play session locally. The huge barrier for Ruby’s family, is that the specialist equipment and toys she so desperately needs are very expensive, as you are well aware.

Ruby does not play with regular toys, as ‘Neurotypical’ children her age would, as they are not age appropriate due to her Global Developmental Delay (GDD.)

Ruby requires a calming space she can relax in when she becomes overwhelmed and goes into sensory meltdown. A place where her parents know she will be safe with toys she can not put in her mouth and hurt herself with.

As Ruby hates physical contact, her parents can not hold her to calm her, she doesn’t give eye contact and becomes distressed when doing day to day tasks with her such as feeding and changing her. As she does not sleep through the night, she will sleep for 15-30 minutes and wake up distressed, screaming headbanging to the point she is sick.

Claire, Ruby’s mum, can not work due to Rubys complex needs, and this why the family are struggling financially. All they want is to provide their daughter with the specialist toys and equipment that she desperately needs.

I’ve always been a huge advocate for the work that Family Fund have done for families, I’ve shared this via the parents support group I coordinate locally, to which Ruby’s mother is a member. My own family have had our photographs taken to use for Family Fund promotional materials.

Mum heart is literally breaking for this little girl and her family, I urge you to please re-consider your decision.

This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m

This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.

Helpful websites:

The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.

SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂

Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.

Wow how much I missed in my last post about our experiences of ODD and PDA!
The following article popped up on my news feed this morning:www.autism.org.uk – What is PDA?

Cue doing what I do best and scoring Lou against the PDA ticklist from the PDA Society and printing off the relevant information for her Paediatrician, I think I’m in ‘fighting mummy’ mode and “What have I got to lose?!”

“Identifies individuals with an elevated risk of having a profile consistent with PDA.”

Lou scored 68!

I’ve found out so much more from the article from the National Autistic Society (NAS,)
I think it’s probably easier to bullet point what I’ve read in terms of our current situation with Lou:

● PDA is anxiety based on a need to be in control – feel secure when in control.
● Boys and girls can be equally effected, unlike Autism and Asperger’s Syndrome.
● PDA presents as controlling and dominating. Lou controls every situation, e.g up and down the stairs “I have to be first,” first to dress, first to finishing eating, will get distressed if I finish my lunch before her saying: “I wanted to be the winner.”
● In the PDA Society Booklet ‘Awareness Matters,’ it talks about children who “put on a performance, hiding all of their difficulties, for limited periods of time,” it does on to say that the people who spend most time with these children, ie parents, notice their problems more.
● I’ve been noticing so much lately about the way in which Lou talks to us as adults, I find it quite rude and bossy. Children with PDA are often seen as ‘mini adults,’ Lou has said to me frequent times, (especially when she’s angry,) that “Mummy you are the child and I’m the adult.” Only yesterday she demanded that I “get up and get some food, now!” When I explained that this isn’t how we should ask for something she counted from 1 to 10 several times then told me to “go onto time out – NOW!” Which is the counting for processing time that we offer as parents when asking her to do something.
● Lou will tell other children how to behave but often doesn’t apply the rules to herself. E.g “you need to hold your mummies hand when crossing the road,” but she doesn’t do it herself.
● Lou will often talk in an adult way, using adult manorisms, for example, she will tell other children off, especially Moo saying “look at my face, good listening now, or its ‘Time out!’
● Lou will often blame other children for her actions, for example she said “Billy did it” after she drew on her trousers with pen. (Name has been changed.)
● Lou will deny actions even if she’s caught red handed, for example, if a book has been ripped she’ll say “Moo did it” even if she’s been asleep upstairs or sat in a high chair nowhere near!
● Lou will show little shame or embarrassment if she throws a tantrum in public, she will not be bothered by people starting or commenting if she’s rolling around having a tantrum on a supermarket floor! It’s taken me a long time to cope with the stares and comments!
● In order to avoid a demand or request, Lou will answer politely: “No thank you,” and often says “I’ve got a sore back,” “my leg hurts.” Or “I’ve got a headache,” to avoid doing something.
● Eye contact – Lou generally uses eye contact especially if things are going her way, although she never uses eye contact when asking her to do something, often making it look like she hasn’t heard us. We have arranged for her to have a hearing test in July to rule out any hearing problems, but deep down I just know that she’s hearing us, but choosing not to listen.
● Links to SPD – another light bulb moment when I read that PDA has links to sensory difficulties in processing information in terms of light, sound, smell, taste and touch. This can also have an effect on Proprioception difficulties (bodily awareness) and vestibular awareness (balance.) I have had concerns about Lou’s spatial awareness and the amount of accidents she has and appears clumsy.
● Severe behavioural difficulties can be present, can have problems controlling temper, and many people can appear passive and compliant at school, but appear very anxious at home. This describes Lou perfectly!

So where do we go now?
I’m currently testing some strategies that involve:

Only this morning we have tried an approach where we offer choices if Lou cannot cope with being asked to “get dressed” we then said “we’re going to leave your clothes here, you can get dressed or we’ll get Moo sorted first.
‘First’ being the operative word, make Lou spring up and collect the clothes saying: “I’ll get dressed now!”

I had used a more wordy but subtle approach with Lou last week after she demanded we go to the park and was scrutinised for “letting her control me” and “not being tough enough with her,” making me think whatever I do I’ll be judged! This is why I’m constantly researching as knowledge = understanding (which I bang on about!) But I just wish everyone could understand!

Further information.
I found that advice in getting a PDA can be found at:www.norscaca.org.uk
At the Elizabeth Newson Centre (Autism East Midlands.)

When researching ADHD, ASD and SPD I have come across ODD and PDA, particularly PDA I’ve seen a lot about recently. I’ve not come across either of these in my childcare career, so I was keen to find out more. I’m no expert and I’m definitely not a Paediatrician! But Lou does almost tick every box of the symptoms for both, but particularly PDA. I was confused before about why she was acting in such ways and this does explain a lot. I’ve been particularly worried lately regarding Lou’s behaviour at home and recently re – referred to Family Support via a local Children’s Centre.

ODD.

Symptoms of ODD may include:

• Throwing repeated temper tantrums• Excessively arguing with adults• Actively refusing to comply with requests and rules• Deliberately trying to annoy or upset others, or being easily annoyed by others• Blaming others for your mistakes• Having frequent outbursts of anger and resentment• Being spiteful and seeking revenge• Swearing or using obscene language• Saying mean and hateful things when upset

From reading these symptoms I could immediately relate to what we are currently experiencing at home.
– Lou throws up to 10 temper tantrums per day.
– She will argue with myself and partner and even pushes boundaries with my dad – who to this day I wouldn’t!
– Any requests or rules Lou is given she will usually ignore and point blank refuse. For example: “Pyjamas on” response = “no” or completely ignores and/or runs away.
– Lou will deliberately annoy and pester Moo, which she does for the majority of the day, Lou is equally annoyed if Moo enters her person space and she will usually push her away.
– Lou has anger outbursts frequently throughout the day, she will scrunch her fists together and growl loudly. Sometimes she will say “I’m really cross.” She will then often throw objects, especially toys.
– Lou can be quite spiteful, if she’s been refused something such as food (if she’s already eaten plenty,) she will say things like “I’m going to climb over the stairgate and get it myself.” This is said in a forceful and angry manner. She will often say things like “I’m going to pick this up and hit you” if she doesn’t want to go to bed.
– We try our upmost to ensure that our children are not exposed to those who swear, which has caused a bit if controversy! But it’s for their best interests, I don’t want Lou repeating this language, which she doesn’t understand.
– As discussed, Lou will often say hurtful things when she’s upset, these can be: “I hate you,” “don’t even look at me.”

PDA.

When looking up PDA I found the PDA society website (link below) most helpful.

People with Pathological Demand Avoidance Syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

PDA is increasingly recognised as part of the autism spectrum.

Many children avoid demands to some extent, but children with PDA do so to a far greater level than is considered usual. This is why it is called pathological.

The main features of PDA are:

• Obsessively resisting ordinary demands• Appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)• Excessive mood swings, often switching suddenly• Comfortable (sometimes to an extreme extent) in role play and pretending• Language delay, seemingly as a result of passivity, but often with a good degree of ‘catch-up’• Obsessive behaviour, often focused on people rather than things.

Many parents describe their child with PDA as a ‘Jekyll and Hyde’. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.

Many children with ASC/PDA can behave very differently with different people and in different situations. They may be able to sufficiently hide their difficulties within the school setting and in other setting such as when visiting relatives or going to a friends house. This can cause real difficulties for the parents because may often feel not believed, not listened to and unsupported by professionals, friends and family members. Also this ability to mask is often at the expense of behaviour at home where the child will release this pent up anxiety.

When reading about PDA it was like a ‘light bulb’ moment, I’m still currently struggling to define between Lou’s difficult behaviour being due to a sensory issue or just defiant behaviour like maybe another 4 year old may also experience?

In relation to the PDA symptoms:
– Lou resists almost every ordinary demand or request (as discussed for ODD,) I find it difficult as to why she laughs and smiles when refusing to hold onto the pushchair when walking next to the road, or when she laughs and runs away wanting to be chased when it’s time to leave the park.
– Lou is very sociable, I’ve discussed in previous posts how she’s friendly to everyone and anyone, she is able to use language to impress, she copies a lot of my language and seems to be ‘an old head on young shoulders’ although she doesn’t always understand what she is saying.
– Lou has definite mood swings, she can go from really happy to angry in a few seconds. She gets extremely frustrated if things do not go her way, for example, if she can’t get clothes off her dolls, she will fight to do it and make grunts and screams instead of asking for help. Lou will go from rolling around on the floor in full meltdown mode, to saying “I’m calm now” only a minute later!
– Lou absolutely loves role play and she will pretend to be ‘Princess Anna’ and ‘Queen Elsa,’ she talks to herself a lot and will repeat phrases she’s heard from role playing with other children. I would say that Lou does live in a bit of a fantasy world, and I can relate to this totally! I used to create senarios where I was a certain character, I was obsessed in fantasy films, and books and still am to this day!
– Lou is obsessed in Moo, she simply cannot leave her alone! If she can hear that Moo is awake from a nap she rushes upstairs full steam ahead! If they are in a room together she has to sit right next to Moo, almost sitting on top of her!

I was interested to read the article: ‘Child masks difficulties in school’ (link above,) I immediately thought “this is Lou” the fact that children with PDA can behave differently in different situations is fascinating, this is my child! Lou masks her difficulties in her childcare setting, she is better at people’s houses like my parents, but still shows some difficulties. If I am present her behaviour is more extreme, Lou will release her anxieties from the day as soon as she reaches home. This is the reason that I’ve been fighting since Lou was 18 months old, as it has been our parenting skills that have been scrutinised constantly. I have discussed this frustration many times through previous Blog posts, and so to receive reassurance through articles, puts my mind at rest. We are extremely lucky that Lou’s new school for September are completely on board and recognise that support can be given at school so that her time at home will hopefully be more positive. I was so relieved to hear this and very greatful !

This research has proved to me even more than every behaviour has a reason, this has helped me to understand Lou more and proves to me even more that ‘research is key, knowledge is understanding.’

I’m writing this post on the back of a meltdown, all is calm(er) now but only 30 minutes ago I can only describe the scene as ‘bedlam.’ It always amazes me how Lou can go from 0 to 100 mph during a meltdown. It was triggered by food, as I had only written a few days ago in the the post ‘I’m hungry.’ Only just after lunch and Lou is demanding food again she’s eaten an ample amount. She sees red and throws my I pad onto our hard kitchen floor, how it didn’t smash I don’t know! Because I wasn’t giving in she then yanked the stairgate clean off the kitchen, I’m surprised I’ve got any door frames left!
I have to therefore remove her to her ‘safe zone’ in her ‘calm tent.’ Immediately after I get any item she can lay her hands on thrown at me and somehow I slipped down the stairs dodging them.
I return a few minutes later to find a calm Lou, however the reason she was quiet is because she’d been ‘exploring’ some Sudocrem she’d found and it’s been rubbed into the fairly new carpet!
It always amazes me how Lou is so ‘Jekyll and Hyde,’ can see red one minute and the next is talking as if nothing has happened!
I have wondered to myself if it’s just me that finds this behaviour extreme, I was a shy and reserved child that wouldn’t have spoken out of place or hit out at anyone. I am a fairly calm and reserved adult, I admire Lou’s spirit and hope that she will use this spirit to not allow herself to be walked all over and to be able to stick up for herself. I do wonder if every 4 year old behaves like this at home! As I’ve only ever experienced other 4 year old’s through my work. I’m often told that “many children behave like this” but when it happens everyday, up to 10 times a day I do question it.
I imagine Lou gets the same sort of head rush that I do during one of her meltdowns, it literally feels like my brain is bouncing from one side of my skull to the other, the only way to try and get through this feeling is to:

Breathe and count to 10!

Several times! And try to stay calm!

I’m often left with a massive headache after a full – on meltdown, especially those where there is destruction. I manage that Lou feels very much the same.

Today I asked for help…
I always find this is a sign of weakness on my part. I had got to the point of almost giving up my current fight for support for Lou last week. Then I look back at the hours I’ve put into this Blog in it’s 3 months, and think “just carry on, just carry on.”

As I discussed in my previous post regarding sibling jealousy, we thought that Lou’s behaviour may improve as Moo grows older and becomes on the move, walking and talking more.
In fact we find as a family, that Lou’s behaviour is in fact worse at home, I have recently described it as appalling, and sometimes unbearable. I love writing positive posts, I love sharing the things that are working, but I hold my hands up and say “we need help.”

We received Family Support through our local children’s centre, we were discharged in January 2016 as we came on leaps and bounds with strategies in terms of visual timetables, bedtime routine, ensuring clear and consistent boundaries and methods for calming anger and frustration, such as using a ‘calm tent’ and squeezing a teddy whilst lying flat on her back. These methods all worked for approximately a month or 2, it’s hard to tell exactly when it started to all get a bit crazy again. I was so pleased how far we’d come as a family, so I was not wanting to admit defeat with our recent issues. Dealing with anger outbursts and flying objects at our heads is hard, Lou is so heavy to carry now so if she’s throwing objects I usually now have to remove myself and Moo from the room rather than removing Lou herself. If I place her in a ‘safe zone’ like her bedroom in her ‘calm tent’ she will pull the stairgate so hard she can lift it from the bottom and escape.

I worry (I worry a lot!) That through this behaviour, Lou is going to hurt herself if Lou, and it’s my job to protect them both. Rather than productively exploring toys such as small world houses and people, Lou will prefer to flip Moo over onto the floor and has started ‘slam dunking’ her onto her lap. If she has a strong grip on Moo I literally will have to prize her hands from the grip she has on Moo. I wonder if this occurs in all households with a child who has similar difficulties, I often think like I need to be a ‘fly on the wall’ to see that I’m not the only one. It’s incredible how much time and energy this takes up, my partner and I have recently described our current situation as:
“2 adults that police our child’s behaviour.”
It is scary to watch Lou in full seeker mode, it’s almost like in her head you can see whizzing, she cannot be still and will climb and jump off furniture, if you try and talk her down she cannot listen her brain is whizzing so fast she’s simply not taking the information in. She is constantly looking around for items to touch and bang on.

Lou also petrifies me near the busy road we have to cross to her Pre School setting, if she’s feeling like she needs to offload before we get home, like today, she will sit on the path and after crossing a road will attempt to run back towards the road, not seeing any dangers. Lou wore reins until she was 3 and a half, they are now to small but I wonder what to do for the best, it’s so difficult when others her age she interacts with don’t have a need for reins anymore.

Therefore today I contacted my local children’s centre again and I self referred our family back into support, we need the help and I’m now not ashamed to admit it.
I will post again when I hear more, let’s keep fingers crossed 🙂

I have wondered now for over a year how a 4 year old child could be hungry for what seems every minute of the day!
Most mornings Lou has already eaten more than me by 10 am! A bowl of cereal at 6am, a banana, toast, raisins etc! I try to offer the most healthy options I can but it’s so hard when Lou is a dry and beige food lover! I couldn’t understand why Lou is forever saying “I’m hungry,” I wondered if it was boredom but I then researched if it could be some connection to her Sensory Processing Disorder. I found out that fact we have 8 senses, the usual: taste, touch, hear, see and smell. But there is also proprioception and vestibular and an internal sense called interoception.

Interoception is a relatively unheard of sensory system. It is the sense responsible for detecting internal regulation responses, such as respiration, hunger, heart rate, and the need for digestive elimination.

This means that Lou literally cannot regulate her hunger, she never feels full and therefore doesn’t feel satisfied that she’s eaten enough. When I spoke to my mum about this she said that I had this problem too as a child, I had a few weight issues until I was about 14 then went through a period where I ate hardly anything due to a social pressure of looking thin as a teenager. From the age of 21 my weight started to rise again and then even more after having 2 children! I have lost 3 stone since Moo’s birth in March 2015, but I am still struggling to feel full and I often see myself as greedy. As an adult I can self regulate and will tell myself that enough us enough, but at 4 years old Lou won’t have this self control yet. Luckily diets such as Slimming World help me to keep a control on my weight and I’ve still got a way to go.
I do worry about Lou’s weight and she is just like me as a child – solid and tall for her age – she is currently in age 6 to 7 years clothes!

Unfortunately Lou is not a fan of many vegetables especially potato, she’s not keen on pasta either, the all important filling foods! I am currently trialling using a sectioned plate as if certain foods aren’t touching she will eat them, she doesn’t like sauces but is a massive fan of chicken! She would literally eat the same thing everyday if she could!

The only thing other than this I can do is to continue to offer a variety of fruits and vegetables as she may find that she likes them, up until a few months ago Lou would only eat bananas, now she will try apples, pineapple and sometimes satsuma. I will also wait in anticipation for this Occupational Therapy appointment that Lou has now been waiting for since October 2015!

Some people may think that I adhere to Lou as a ‘fussy eater’ but I’d say it’s not being ‘fussy’ it’s Sensory Processing Disorder 🙂 And awareness is key to understanding her needs.

Research series:Attachment difficulties in relation to our experiences.

I am currently researching various difficulties that relate to our experiences that will help me understand Lou more. But also to enhance my knowledge and understanding of SEND in general to help with future job roles when I return to work. I am completing an online course in ‘Understanding Autism, Asperger’s and ADHD through The University of Derby via http://www.canvas.net

Here I will start with discussing ‘Attachment Difficulties’ :
I hadn’t really thought of Lou as having any sort if attachment difficulty until recently. When piecing it all together and reading up on the subject I’ve realised how it relates to our experiences. I was worried when I first started reading (as I do worry at lot!) That this meant that I didn’t bond with Lou as a baby, I had been asked this during an appointment with a professional when I first started to seek help for Lou’s behaviours at home. But then I thought – of course we bonded, Lou has never been one for cuddling and I’ve been told that from about the age of 6 months I would shy away from physical affection. Lou likes to be cuddled on her own terms and if she doesn’t want to be cuddled at that moment she will squirm away! When unexpected cuddles do happen it’s a massive squeeze! I have looked at attachment theory after a few discussions with professionals that work with Lou I was given a book to read called:

Observing Children with Attachment Difficulties in Preschool Settings

by Kim S. Goulding et al. The observational checklist from this book is most helpful and it was suggested that I should take this along to Lou’s next appointment with her Paediatrician as it may explain some of the emotional issues that Lou displays.

Lou has a great sense of humour, her laugh is infectious but I have described her as ‘Jekyll and Hyde,’ she can switch from being extremely happy to very angry in a second and back again minutes later. Lou has trouble controlling her emotions so I do my best to help her label how she’s feeling, especially by using visual cards which display various emotions. If she is having an angry outburst which could have stemmed from me going upstairs without her, we have certain methods to help calm, such as getting her favourite teddy and squeezing it hard, lying flat on the floor and breathing in and out whilst counting to 10.

From using the Observational checklist I noticed a pattern that Lou is secure at parting from me when I drop her off at her Early Years setting, she is happy to go off in the mornings and quite happy to go and explore what’s on offer. She will run at me with great pace at the end of the day when I collect her! Lou was used to being left at a childminder and nursery when I returned to work full time when she was only 10 months old. She cried for a week when I left her at nursery but since then she’s never had a problem parting from me. Lou’s attachment difficulties happen at home or in public, or even at her grandparent’s house. In fact, it happens where ever I am! I am unsure of the reasoning why but whenever I am present, Lou’s behaviour is worse, especially if I am present with her younger sister Moo. I was talking to someone about this as it seems to me that Lou has issues around me as she knows that I carried Moo and brought her into our family. Please see my further post on ‘Extreme Jealousy’ for more on this.

A typical day at home is Lou following my every move, she dislikes being in a room on her own. This also happens at her grandparent’s – if she is left downstairs – even if I’ve only popped upstairs to collect something for a second, she will have a major meltdown. If we move up or down the stairs she has to be in front everytime or this will cause another meltdown. Lou will be unable to productively play with toys if Moo is in the room, she is majorly distracted by her and will just want to rough-house and roll her over! Lou will be unable to play with any toys without adult guidance. She is very demanding of attention and will give comands such as “come here now” and comes over very bossy! Lou likes to control her environment, she likes to control what Moo is doing and often snatch toys away from her. Lou loves the outdoors, but she will not feel settled out there in her own, if an adult is outside she will quite happily explore, play in the sand pit or on her bike. I had an example of Lou’s impulsive behaviour if she’s detached from me only today, where I had to get out at a petrol station and she thought I was going inside without her, so she broke out of her car seat and flew open the car door, and jumped onto the forcourt not seeing any dangers like cars around. She has run off from my parents at the same garage before and we are still unable to explain really why she does this.

The section in the Observational Checklist about how the child behaves with unfamiliar adults was really interesting as she is overly affectionate and gets right up in people’s faces, she will sit next to people on the bus and say: “Are you my nanny? Can I come to your house?” She also is very inquisitive and has no filter, she will say things ‘as it is!’ She asks her Aunt everytime she sees her: “why have you got funny teeth!?” Lou gets very anxious when she knows that we’re going somewhere, especially if it’s somewhere new. She requires a lot of reassurance and the use of a visual timetable, if she is worried about going somewhere she will usually run around the living room in circles or hurt her sister. She also completely surprises us with her reactions as they are not always what you’d expect them to be! As Lou is a sensory seeker, she was quite happy to watch the needles for both her Pre School injections and a recent blood test and didn’t even flinch! Yet even I can’t watch!

Lou’s behaviour around me can be fascinating especially in a situation where I would lead a class with her present, she simply couldn’t handle it and will do anything she can to gain my attention away from other children. She would sabotage my weekly music sessions by taking my equipment or crawling around the floor, although won’t display this behaviour if I wasn’t present in the room. After the session Lou will say to me: “Oh Mummy, why do you have to come to my Preschool to do music?!” I must admit there have been lots of times when I’ve wondered if I’m to blame for all this, as soon as I’m in the equation Lou steps up with the difficult behaviours, I’ve felt like a failure and cried over it many times. After 2 very successful parenting courses through Wychavon Early Help (Pershore) I have gained confidence and tell myself “it’s not my fault.” I found that the Triple P parenting course and Family Links were most beneficial as they allowed me to also talk to other parents who experience the same. We were also given support of ‘Protective Behaviours’ for Lou, due to her unawareness of ‘Stranger Danger,’ I’ve had to discuss that it’s OK to say hello and to be friendly, but also had to ensure that Lou isn’t too trusting so that she would happily go off with a stranger and this will have to be revistied as she gets older.

I do find it very helpful to research what makes this ‘loveable little rogue’ tick 🙂

A review of our experiences with SMILE at ARCOS, Malvern, Worcestershire.

The SMILE (Sensation Movement Interaction in Life Experiences) Project is based at the ARCOS (Association for the Rehabilitation of Communication and Oral Skills.)
We were first introduced to SMILE via one of my daughter’s Pre School teachers who had visited the centre previously. After reading the information leaflets I was given, I thought that SMILE would be somewhere that would really benefit my child, Amber (4) who has Sensory Processing Disorder (SPD) with traits of ASD and ADHD. I contacted Sam the project leader who encouraged me to visit the centre to have a look at the facilities. I first visited with my youngest daughter Maisie (15 months) she thoroughly enjoyed exploring the equipment such as bubble tubes, the snug area and had some time in the music, dance and drama room exploring the instruments, which is really her thing! This visited enabled me to ask questions and throughly get a feel for the surroundings. I talked with Sam about Amber’s current needs and problems she faces.
SMILE is great as it offers both group or individual session in both term time and school holidays.

I was given a leaflet about Family Fund – a charity that provides grants for disabled or seriously ill children. I’d not heard of Family Fund before but after an assessment they provided Amber with a grant to attend 8 sessions at SMILE to which I am eternally greatful.

The first time Amber attended SMILE we met Sam again and Charlotte who were fantastic at allowing Amber to freely explore the sensory room. They had set out a shop role play activity as this was one of Amber’s current interests. It was great to see Amber’s interaction and join in with the imaginative play. We were at complete ease during the 1 hour session I almost forgot where we were! It was truly amazing to have such positive interactions without the pressures and constraints if being at home and having to do everyday tasks, such as housework. These sessions will also benefit Amber’s father greatly to join in with creative or sensory play which offer such great interactive experiences, Amber’s father works full-time and has moderate learning difficulties, to interact in such a calm and relaxing environment will be of great benefit to us as a family.

In the second session Amber attended, she experienced one of her favourite activities which allows for her ‘Sensory Seeking’ this was baking some cookies. Charlotte, who led the activity had thought the activity out so well that she’d included a recipe without egg, being mindful that Amber is allergic to egg. She also included a ‘Social Story’ which Amber responded well to and I now use these at home. What I really liked about this session was that Amber could explore the baking materials, for example feeling the flour in her hands and it didn’t matter if she made a mess, which was like therapy for me to just allow myself to enjoy Amber exploring the activity. Whilst the cookies were baking Charlotte introduced Amber to the project’s new additions – chickens and cockerel! Amber throughly enjoyed meeting them and learning all their names, she has since told me that ‘Billy the Bantam’ is her favourite!

Amber is very much looking forward to visiting SMILE in the summer holidays. She requested a sand activity next!

I would recommend SMILE to any parents, it is a wonderful and supportive place. I just wish I took some pictures but we were both so absorbed in the activity!

July Family Fund Blog Post.

A little background information

This is Amber she is 4 years old and has Sensory Processing Disorder (SPD) with traits of ADHD and Autism.

Amber has a younger sister Maisie who is 15 months old and lives with Mummy – Nicki and Daddy – Paul in a village in Worcestershire.
Amber is a lively little girl who’s always on the go, she finds it difficult to control her emotions and frustration. She requires a calm place if it all gets too much at home. Amber is a ‘Sensory Seeker’ and therefore will thrive on all sensory experiences, the messier the better! Family Fund provided Amber with a grant for Sensory toys and equipment from Learning SPACE and sessions at a local multi-sensory centre called SMILE (Sensation Movement Interaction in Life Experiences) at ARCOS (Association for Rehabilitation of Communication and Oral skills,) in Malvern, Worcestershire. We have noticed a marked improvement in Amber’s ability to cope with sensory overload, frustration and anger and will use the toys and equipment in her calm place.

Keeping active.

As Amber has a great deal of energy, activities that ensure she burns this energy are of great benefit. She is very happy to try out any activity that allows her to run around and be free of constraints. She is looking forward to her Pre School Sports Day in July, and enjoyed practising recently. Amber has expressed that she would like to ask Father Christmas for a trampoline for the garden this Christmas, so already forward planning! We feel that a Trampoline would be a great addition for those times when she just wants to be constantly active and it all gets a bit too much for her indoors.

When Amber reached 4 her father and I discussed the possibility of a leisure activity to help build friendships and give her the opportunity to burn off the great amount of energy she has. Amber had expressed that she would like to try Ballet. I emailed ahead and explained Amber’s interest in the class and also some of the difficulties she experiences. We went along to the Saturday morning class, Amber seemed quite anxious as the waiting room was full of parents and their children and she clung onto me. The dance studio was spacious and Amber saw the opportunity to run around in circles. She was curious at first about what the other children in the class were doing but as her attention span is short she wanted to return to where I was sat for reassurance as this was a completely new experience for her. The other children had all been asked to take a teddy along to the class and unfortunately this request hadn’t been given to us, and this completely threw Amber and she could only concentrate on the fact that she didn’t have her teddy. Amber then wanted to run around the class, who were sat in a circle. The class teacher said to Amber “Please could you stop running around as it’s distracting the other girls.” This did upset me as I had told the teacher about Amber’s difficulties and especially as it was a completely new experience for her. Amber then approached me and said “Mummy I want to go home.” So we left the class, and she had a complete meltdown outside whilst on the way home.

We didn’t want to give up on an activity just yet and a friend recommended a local Football scheme for 3 to 5 year olds called ‘Footie Bugs.’ Again, I emailed ahead to the scheme leader and they were most helpful and understanding of Amber’s additional needs. Amber had to take in all the sounds from the large sports hall and being around unfamiliar adults and children, but for her first session we were impressed that she enjoyed kicking the ball about and joined in when a game of ‘Sharks’ was played! Towards the end of the 45 minute class Amber was tired and ran out of the sports hall but she was happy to return each week for a further 12 sessions. There was no pressure for her to join in as she could kick a ball around at the side of the sports hall and she wouldn’t disrupt the rest of the class. The classes are great as you can pick them up as and when required by booking in 6 week blocks, and still run through school holidays. What kept Amber engaged was that each weekly session would be based on a theme, whether it was Space, Zoo animals or Under the Sea. Amber particularly responded to the theme of ‘Superheros’ as at the time she had an interest in being ‘Spidergirl!’ The class leader would support Amber and another child during the session, especially if it looked like she was losing concentration.

I had a great rapport with the leader and she would check how Amber was progressing. The absolute highlight of the session was when Amber got to bring the group mascot ‘Footie Bug’ home and we wrote in his diary about the week he’d spent at home with Amber!

From September Amber starts full-time at school, we are waiting to see how she settles in and then hope to try either a gym class, street dance or swimming lessons as she is anxious about getting into the swimming pool, but has expressed an interest in giving it a try. There seems to be more variety of activities once children reach the age of 5.